New here: can CPAP make symptoms worse? Also UPPP surgery scares.

[Rafaellavera]

Greetings everyone,
I'm new here and just discovered this forum. I am looking forward to learning a lot more here.

I have 2 questions.
1) Can health issues get worse while on CPAP?
2) I have scheduled UPPP surgery in January 2019 but now I'm getting scared and thinking of backing out.

Background Details:

I am 50 years old and started CPAP therapy 3 years ago. A boyfriend told me I snored so I decided to have a sleep study done in 2015 and was diagnosed with almost severe OSA and had an AHI of 38.5 so my doctor put me on cpap therapy with a air pressure of 8. While using the cpap my AHI has dropped to only .5-3 events per hour depending on how tired I am. According to my doctor this is successful. The problem is that since using the cpap for 3 years I still feel tired all the time, I was getting more sinus congestion/infections than before, I've gained over 20 lbs, and my blood pressure has increased steadily to the point now that my doctor has put me on blood pressure medicine Benazepril, and my cholesterol has also increased. I look far worse than when I started cpap therapy. And now if I choose to take a 15-30 min nap and not use the cpap machine I usually wake up with a migraine. Also when I am very tired it sometimes seems that I stop breathing even when I am still awake. I worry that I may have developed Central Apnea. Just this morning I woke up around 5:00am (before my usual 7am waking) with my heart racing. I tried to relax and fall back to sleep and I could feel the air coming from my mask (no leak reported on the machine) blowing on my chest which woke me up again. I'm starting to have this heart racing during sleep happen other times too. I am also dealing with some mild depression which is not normal for me. I think my quality of sleep is still very poor despite what the CPAP machine tells my doctors.

Earlier this year I had a sleep endoscopy performed and the surgeon recommended UPPP surgery. According to him and an ENT I have severe tonsil hypertrophy. I also had 8 teeth pulled prior to having braces when I was a young girl and as a result I have a very small mouth and a tongue that has no space to rest properly so it also blocks my throat. Combine that with a receding jaw line and perimenopause (low progesterone) which causes the tongue and throat to relax more when I sleep, it seems that the only real solution would be mandibular advancement surgery and also UPPP. I don't think I can afford the jaw surgery so I'm looking at UPPP and also seeing if I am a candidate for the INSPIRE hypoglossal stimulator.

The surgeon who performed the sleep endoscopy said I might have 50% reduction in my sleep apnea after UPPP surgery but I will still probably need to use the CPAP. The ENT said I might only have 20% improvement with UPPP and still have to use CPAP machine or later look into getting the INSPIRE device.

I'm 50 years old and having UPPP surgery scares me to death and the odds are that my symptoms will only improve slightly. I hate the idea of any surgery unless medically necessary but I don't think the CPAP is working well for me.

Can anyone offer any suggestions or talk to me about UPPP surgery?

Thank you!

[Okie bipap]

In response to your first question, I have never heard of anyone's medical condition deteriorating due to the use of a CPAP machine.

I had UPPP surgery over 20 years ago when I was a few years older than you are. It was a very painful recovery. My throat and back of my mouth hurt very much. The surgeon I had prescribed a liquid pain relief medication. The only problem, it was alcohol based and really burned when I took it the first time. I had my wife go to the local pharmacy and pick up a bottle of Cepacol spray and would would spray my mouth and throat with at before taking my pain medication. He prescribed the liquid because he thought pills would be too hard to swallow. After the surgery, I was unable to eat any spicy food for several years because it bothered my throat too much. However, it did alleviate many of my sleep apnea symptoms for several years. I have not snored since the surgery, my daytime sleepiness went away and I could once again drive for several hours without stopping to take a nap. The daytime sleepiness began to come back about six years ago, and I started treatment with a bi-level machine about 3 1/2 years ago. I have a nephew who had the UPPP surgery and his sleep apnea was still severe enough to go on a CPAP as soon as he recovered from the surgery.

[kteague]

Hello and welcome. First thing I'd want to do is let the data knowledgeable folks her looks at your machine data. They may be able to pick up on something where your treatment is not optimized. If so, that could be contributing to your decline in well being. If you happen to have developed central sleep apnea, your data should reveal that. If the machine is effectively treating your sleep disordered breathing, then you'll know to look outside this diagnosis for answers. If you still suspect bad sleep may be at issue, maybe your doctor would be open to having an in-lab sleep study with you using your CPAP at a proven effective pressure. That's what you need to know - what else is wrong beyond the CPAP treatment. Have you ever had any indication that you could have an issue with limb movements, or jumpy legs when sleeping? People (like me) who have that issue do not get restorative sleep even with CPAP. It does, however, remove OSA from the equation.

As to your ENT issues, total removal of the uvula would never be acceptable to me. It is a part of our anatomy for a reason. I had a friend who had his uvula removed and when drinking the stuff would go up and out his nose. If your tonsils are actually obstructing in a way that interferes with CPAP use, that may be a case to consider removal. In any surgical procedure, a second opinion is a good idea, determining if each specific procedure suggested will actually accomplish your goals. Yes, our tongues are a lead culprit in sleep apnea. Until my OSA was resolved with effective treatment, my tongue was too large for my mouth. Eventually it went back to a normal size. But even at a normal size, it still was a factor in my OSA. A techique I learned from others on here is to habitually keep my tongue suctioned up against the roof of my mouth, with the tip just behind my front teeth. This single factor has made the biggest difference for me. Best wishes in foguring out what will work best for you.

[Julie]

If you want bad 'reviews' of UPPP surgery, you've come to the right place - it almost never really works beyond a few months and then you're stuck still needing Cpap, but with new issues that may make it harder to use. And the MAD doesn't seem a lot better. Before jumping to the Inspire - still really experimental to an extent - Is there a reason you're on plain Cpap vs Apap? There are people here who can help you get to a better Cpap place with some adjustments, so please stay with this thread and wait to hear more.

[Pugsy]

Welcome to the forum.

Do you take any medications of any kind? If so what?

Exactly what symptoms are you having that you feel cpap should have fixed but didn't?

You know that migraine you get when you take a nap without the cpap....that's probably because your oxygen levels dropped because of the apneas happening.
If a nap causes that much damage...imagine how much damage will happen if you sleep all night without cpap...and the chance of the UPPP fixing that issue well enough is slim and none. Even a "successful" 50% reduction in apnea events will still leave you with close to 20 AHI....not good enough in my book...no where near good enough.

[Pugsy]

You've got a full data machine...and maybe something on those reports might give us a clue as to why you don't feel the good numbers.
Never hurts to look.
There's so much more to good quality sleep than just the AHI anyway.
Get Sleepyhead and post a couple of typical nights and we can look to see if anything in it is standing out screaming "fix me and you will feel better".

[Rafaellavera]

Thanks for all of the comments so far!

As for my data, the DME supplier gave me a CPAP without an SD Card. They told me I didn't need it because all the info was through the "myAir" app. Unfortunately, that data gives me very little info (only number of events per hour and how many hours I used it). I was told by the supplier if I buy my own SD Card that isn't made by the supplier I could forfeit the warranty on the cpap machine and yet they refuse to supply me with one. My doctor can access more info on a separate website but the supplier won't give me access to that and I don't think he is monitoring it at all. I've been trying to figure out a way around the system so that I can access more data and import it into SleepyHead or something similar.I have been very frustrated dealing with my DME provider.

As for medications, the only prescription medication I am currently taking is for blood pressure which is5MG OF BENAZEPRIL. which I take at night before going to bed.

PRE-CPAP USE: I used to wake up with mild headaches and have daytime tiredness. I also used to snore all through the night.

CPAP USE: No headaches upon waking up, no snoring at all - but now when I nap without the CPAP it seem that my apnea has gotten much worse and I wake with migraines. I also seem to forget to breathe and I never had that problem before. It isn't so much that I am struggling to breathe as it seems that my body is forgetting to breathe. I also have gained weight, has less energy, and now have high blood pressure and high cholesterol. I didn't have that prior to cpap use. I now also have racing heart beats during the night that often wake me up.

I am currently using an Apple Watch to help monitor my sleep patterns through apps like SLEEP CYCLE, PILLOW, SLEEP PULSE 3, AND SLEEP ++. I don't know if the data from these apps can help but I'll see if I can share the reports from those.

Yes, I am very interested to hear good and bad experiences of UPPP surgery, especially when done for older adults.

[Pugsy]

I was told by the supplier if I buy my own SD Card that isn't made by the supplier I could forfeit the warranty on the cpap machine and yet they refuse to supply me with one.

Bullshit. They won't know and have no way of knowing you get a SD card unless you tell them and with them spouting this BS I sure wouldn't tell them. Bald face lie. They want to keep you in the dark and under their thumb.

Any generic SD card will work just fine...I have been using a cheap generic Sandisk SD card that I got at Walmart in my last 2 machines.

Google the side effects for your medication...look at multiple references.
It has potential for some unwanted side effects.

If you are having central apneas...your machine can flag them.
Get the software...use it. No one will know unless you tell them.

[Thumper68]

Pugsy is correct on flying the bullshit flag about the SD card. Get a card and download sleepyhead. Post some charts from sleepyhead and let the experts help you optimize your treatment.

Most of us here have taken charge of our own treatment. There is a wealth of information here and several experts on treatment as well. You can do this. In my opinion you owe it to yourself to optimize your treatment before considering any surgical procedures.

[palerider]

I was told by the supplier if I buy my own SD Card that isn't made by the supplier I could forfeit the warranty on the cpap machine and yet they refuse to supply me with one.

suppliers are known to lie to people, this is one such lie.

It doesn't matter what SD card you put in the machine, it won't change the machine at all... in fact you can open it up and look at all the parts inside that that (by law) won't void your warranty.

My doctor can access more info on a separate website but the supplier won't give me access to that and I don't think he is monitoring it at all. I've been trying to figure out a way around the system so that I can access more data and import it into SleepyHead or something similar.I have been very frustrated dealing with my DME provider.

Resmeds write more detailed data directly to the card than the transmit over the modem, still best to have a card in the machine.

[TropicalDiver]

I am not medical professional nor am I super familiar with your possible surgery. That said, neither doctor views your surgery as totally curative (best case was 50%, worst case was 20%, improvement). We can also have more than one medical problem at the same time (indeed, even more than one sleep problem at the same time).

If it were me, I would start with a SD card and Sleepy Head. If you are super concerned about the SD card (and I see no reason to be), you could get a ResMed branded one. As others have noted, the highest resolution data is stored on the card. Others here can help you refine your treatment once they see the data.

If you have optimized your treatment, and you still have the issues, then it is time to explore other potential causes and/or treatment alternatives. That is a bridge to perhaps cross on another day.

[zoocrewphoto]

People tend to get worse over time, so while your ahi was 38 a few years ago, it would probably be higher now without cpap, and will be even higher in a few years if you don't use cpap. That's just normal as we age.

Now, using cpap on a regular basis, we tend to stop doing the compensating that we did before cpap. For example, without cpap, a person with sleep apnea may sleep lightly and wake up a lot more frequently. The brain is trying to stop the oxygen fro going too low, so it doesn't allow the person to sleep deeply. Once we use cpap for awhile, we can give that up and sleep more deeply. So, if we then skip a night, we don't automatically defend ourselves by sleeping lightly. So, we have a worse night that we would have had pre cpap. Also, we know the difference better. That crappy slept took years to creep up on us, so we didn't realize how crappy it felt until we slept better. So, even a decent night without cpap feels worse than it did before. It's a good reminder to also sleep with the cpap.

As to the surgery. As mentioned a 50% reduction is considered success, and 50% of 38 ahi is 19. That is still moderate sleep apnea. If you have gotten worse over the years, like most people do, your "successfully treated" results would still be considered severe sleep apnea. Why bother with the pain and permanent effects of the surgery if you are going to be moderate or severe anyway? It seems like a waste of money and pain. Your mouth will also be small. Your airway will always be small. (I had the teeth out, braces, etc, too). Nothing is going to fix that. They have methods now to help kids who can still grow and develop, but it's too late for us.

You've got a machine with full data available. So, let's try to make your cpap more successful. Since nobody has bothered to look at your detailed data (even the doctor can't since you don't have a card to record the data), then clearly nobody has bothered to make sure you have ideal settings and true success. Even an ahi of 3 is hard on some people, and the events happen to be in clusters and/or long, they can still cause some big dips in oxygen saturation.

A pressure of 8 is pretty low, so there is plenty of room to improve treatment if the events are obstructive. If you have central sleep apnea, a different machine would be better. but we can figure that out with teh data. And even that machine would be far better than surgery (which wouldn't help central sleep apnea anyway).

[Arlene1963]

Hi and welcome to the forum,

You mention being peri menopausal and that hormonal changes are contributing to making your OSA worse. This is very likely, and if your obstructive sleep apnea is worse now than it was a few years ago your CPAP pressure needs will have changed.

It's also likely that hormonal changes are responsible for some of the weight gain you've experienced in the last 3 years or so. Isn't menopause a blast.

Hormonal changes could also be responsible for your racing heart symptoms. Many women experience overlapping symptoms of the hormonal changes of menopause and obstructive sleep apnea. Unfortunately the symptoms are so similar that it can be hard to untangle.

I think you are very smart to come here and ask about surgery before proceeding. Frankly the idea of surgery would scare me as well and when I look at the statistics and what is actually achieved, I would never contemplate surgery for OSA before completely exhausting every single other option.

I will simply echo what others here advise, make absolutely sure that your sleep apnea is optimally treated with your machine, and that you have no other sleep related disorders like PLMD or restless legs that could be interfering with getting restful sleep.

[Pugsy]

The only part of the UPPP procedure that I would ever entertain doing would be the tonsil removal...and then only after trying everything else first...and only if the tonsils were chronically infected type of problem.

Tonsil removal helps OSA in kids quite often...not so much in adults though because we usually have other issues contributing to the OSA besides just enlarged tonsils.

I have read way too many negatives about the UPPP surgery to ever really consider it or even a portion of it...when you cut something out you can't ever put it back.

CPAP therapy itself doesn't usually make OSA worse...now it can make our sleep quality worse because we have trouble sleeping in general with all this stuff.
It can in some people trigger central apnea...about 10% of the people who start cpap therapy for OSA will end up with cpap emergent/triggered central apnea. Even if they do it's not the end of the world and there are ways of addressing the issue.
If you have an AHI of 3.0...and they are all real centrals...it's still not bad enough that doctors will want to do anything special about it.
A few central apneas here and there won't hurt you. Hold your breath for 10 seconds...that's a 10 second central apnea...we can do that easily without it being a problem.

[Nick Danger]

I had UPPP and it didn't help. I then had genoglossal and hyoid advancement surgery and they reduced symptoms for a year or so. If I had it to do over again I wouldn't do any of those surgeries. The one surgery that helped me was a septoplasty and turbinate reduction - as soon as the inflammation from the surgery decreased, I felt an immediate improvement in my ability to breathe through my nose. I would do that one again.

Net long term effect of UPPP, genoglossal advancement, and hyoid advancement surgeries: nil.

Net long term effect of septoplasty and turbinate reduction: much better air flow through my nose (both sleeping and awake), reduction in max CPAP pressure from 13 to 9.

P.S. my ENT counted both the UPPP and the advancement surgeries as "successes". Although I think the "success" was that I paid a couple of semesters of tuition for his kids schooling.